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|Other Titles:||Stressors Coping and Needs of the Families with Rare Disorders|
Agnes Huei-Ling Tsai
Department of Educational Psychology, NTNU
This current study aims to survey the stress coping and needs of families with rare disorder patients. Using qualitative methodology, semi-structured interviews were conducted with 36 family and patients from 21 families with rare disorder patients in Kaohsiung City. The research team maintains neutrality and adheres to the ethical standard during the data collecting process to protect the interviewees' rights and confidentiality while ensuring the authenticity of the content. Interview data were coded, conceptualized, categorized, and checked for reliability and validity. The study concluded that the biggest stressor of the families with rare disorder patients comes from caring for the patient. Families hope that social welfare policy can be more adaptable and can provide respite services, such as temporary care release, for the family. Second, family ecological system was impacted. Family burden from caring would be lessened if family events, such as having new baby, balancing family finances, and maintaining family relationships, could be shared among family members. Third, increasing social acceptance and acknowledgl11ent of rare disorders through education via mass media would help relieve family stress. Fourth, patients with rare disorders often need alternative treatment and rehabilitative needs. These families hope for improved neath care quality, more government resources for research to enhance treatment efficacy, and more respect and empathy in the treatment process. In all, families with rare disorder patients expect a more coordinated plan that addresses patients ' education, career, and health care needs. They call for the government to establish a more respectful health care system as these patients need more social acceptance as well as more empathic care from people and policy makers in the social welfare, education, and medical systems.
|Appears in Collections:||教育心理學報|
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